Heather Von St. James - Mesothelioma Cancer Alliance Bloghttp://www.mesothelioma.com/blog/authors/heather/
Recent news and information concerning mesothelioma and asbestos.en-usBreathing New Life Into Lung Leavin' DayHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/breathing-new-life-into-lung-leavin-day.htm
http://www.mesothelioma.com/blog/authors/heather/breathing-new-life-into-lung-leavin-day.htmThu, 26 Feb 2015 05:00:00 GMTEvery year following Lung Leavin’ Day, I write a recap of the evening. This year I wanted to do something a little different. I know the event has a huge effect on people, and in the last couple of years people have shared their feelings about the night with me. I thought I would ask a few friends about their thoughts on the tradition and share them with you.Fear means different things to different people. To some, fear manifests as anger. For others, fear is sorrow. For each person, identifying...mesotheliomalung leavin' daylungleavin daymesothelioma survivorsmesothelioma researchasbestos disease awareness organizationADAOMesothelioma Applied Research FoundationMARF

Every year following Lung Leavin’ Day, I write a recap of the evening. This year I wanted to do something a little different. I know the event has a huge effect on people, and in the last couple of years people have shared their feelings about the night with me. I thought I would ask a few friends about their thoughts on the tradition and share them with you.

Fear means different things to different people. To some, fear manifests as anger. For others, fear is sorrow. For each person, identifying their fears is an intensely personal part of Lung Leavin’ Day. To give those fears a voice, share them with others, and then smash them in the fire is often an overwhelming and cathartic experience.

Last year, after the night’s celebration, I got a very long text from a dear friend. At the time, he was in a transitional period having just left his job, and he was trying to figure out what he wanted and needed to do. I didn't know it at the time, but he was also suffering from an eating disorder. That night, after the LLD party, his text told me that he finally felt he had the courage to get help and get healthy. Smashing his fears in the fire and the celebration helped put things into perspective. I’m so pleased to say he is getting help and doing really well today.

Suzi's Perspective

My dear friend Suzi writes: “I went to my first Lung Leavin’ Day party in 2009. I had only known Heather a short time, but was obviously moved by her incredible story. I instantly felt a special bond to Heather as many people do and wanted to share in this incredible celebration of courage, hope and strength. What I didn’t realize is how much I would personally gain from attending this event. I came to the event wanting to smash that plate as hard as I could, and I mean SMASH IT! I was in the middle of a very difficult divorce and up against my greatest fear of being alone and raising my then 2 year old son. I was so angry at that time and thought that smashing a plate in a fire would be just the ticket to getting some of that anger out. When Heather informed me that I needed to smash the plate to eliminate my fears and not my anger, it became harder for me to look into what those fears truly were. It made me really take a look at myself and I realized I was very scared. My future was no longer what I planned it to be and I was lost.

Every year since, I have attended Lung Leavin’ Day and every year I became less angry and my strength grew. This party not only is a celebration of my dear friend Heather’s life, but also of mine. I gained my strength back and I am happy to say that being a single Mom is not so bad, in fact it is the most rewarding thing I have ever done. I am looking forward to many parties to come!!”

Katelin's Perspective

Katelin, a family friend who I’ve known for over 15 years, and who was Lily’s nanny while I went through treatment, has this to say about the night: “I will never miss Lung Leavin’ Day! I have attended every year since Heather and Cams have put this together.

I look forward to meeting new people and visiting with people I literally only see at Lung Leavin’ Day. I have built many long standing friendships from LLD.

Heather is family to me, I have known Heather and her family since I was young. Our dads grew up together in the Black Hills. They shared a lot of life passions together and were all part of the manly hunting group "Powder River". Unfortunately, last year Heather's dad passed; he will be missed every single day. He was a huge part of my life and has a strong spot in my heart.

This gathering is more than just a gathering to mingle, meet and greet, etc. This day is exciting, safe, no worries, open arms, loving, and builds incredible memories every year. It is a celebration of life with people from all over. Each of us has a story and the unique thing is we all have different ones. Together we share our life stories while having a wonderful night. A huge part and fun of the evening is writing on a plate and breaking it over the bonfire. By taking a plate you write your fears on your plate and then break free of it over the fire. I take writing on my plate very serious. I put a lot of thought and emotions into it. In a strange way it is like a mini therapy session with myself. From attending Lung Leavin’ Day I gradually over the years have learned to accept "fear." It is not so scary after all, and the challenges of fears in everyday life is a blessing.”

--

Every year, the crowd grows at Lung Leavin’ Day; this year we had over 100 people celebrating with us. Five mesothelioma survivors were present to smash their fears and share experiences with one another. Cancer survivors from the local “Stupid Cancer“ meetup group were in attendance as well.

I also received texts from friends around the country who gathered together with their families and friends to write their fears on their paper plate and burn them in bonfires. From the beginning, my husband said this holiday would be celebrated all over, and this year’s event has proven that statement to be true.

Besides serving as therapy for some, Lung Leavin’ Day is also a fundraiser for mesothelioma research. The icing on the cake is that we raised over $6000 for MARF and ADAO this year!

Next year is the 10th anniversary of Lung Leavin’ Day, and we are already discussing what to do to make it even better.

What I know for certain is someone will gain something wonderful from the night, someone will overcome a fear that has been bothering them, and many fears will lie in the ashes for another year.

Happy Lung Leavin’ Day!

]]>Reflecting on the "Firsts" of 2014Heather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/reflecting-on-the-firsts-of-2014.htm
http://www.mesothelioma.com/blog/authors/heather/reflecting-on-the-firsts-of-2014.htmThu, 08 Jan 2015 05:00:00 GMTAs a society, we put a huge emphasis on our children’s “firsts”: baby’s first tooth, baby’s first steps. The first birthday, the first day of school. Oh my, how I remember that day with Lily! So many of her firsts were milestones simply for the fact that I was not supposed to be alive to see them. I treasured each of those firsts, and marked the occasions with pictures and videos. I even still have her first tooth somewhere.This last year was full of another kind of firsts. The kind that many people...heather von st. jamesmesotheliomamesotheliomamalignant mesotheliomamesothelioma applied research foundationMARFasbestos disease awareness organizationADAO2014 recap

As a society, we put a huge emphasis on our children’s “firsts”: baby’s first tooth, baby’s first steps. The first birthday, the first day of school. Oh my, how I remember that day with Lily! So many of her firsts were milestones simply for the fact that I was not supposed to be alive to see them. I treasured each of those firsts, and marked the occasions with pictures and videos. I even still have her first tooth somewhere.

This last year was full of another kind of firsts. The kind that many people don’t like to talk about. The kind that are observed quietly and in solitude. They’re all the firsts since my father died of renal carcinoma in February 2014. This last year was an eventful year, but had a shadow over it that I’ve still not completely shaken.

Every year, I look forward to the annual symposium on malignant mesothelioma put on by the Mesothelioma Applied Research Foundation, but my father’s death coincided with the conference, so I was not able to attend. It was the first one I’ve missed in 4 years. The entire community sent their support and love, proving to me once again that the people in the meso community have some of the biggest hearts of any people I know.

That first, the loss of a parent, is one many others in the meso community also went through this year. We were able to console one another, cry with one another, and mark the anniversary of each month of the passing. Yes, it sounds morbid, I know, but taking a moment on the 28th of each month to pause and just remember is part of my healing process.

A lot of exciting firsts happened in 2014 as well. I received The Alan Reinstein Award at the 10th annual Asbestos Disease Awareness Organization’s conference -- my first award! It was an honor to receive it from the ADAO in recognition for all the advocacy and awareness work I do, and I know my dad was there with me. I was able to tell him about the award before he died, and he beamed with pride.

I’ll tell you a secret. My dad has always been the driving force behind what I do. Not only to make him proud, but to take something that devastated our family all those years ago, and turn it around into something good makes it all worth the fight.

There were many ordinary firsts as well, all marked by the absence of my dad, but his spirit is strong. I felt his presence in all I did. I did many podcasts and interviews, including an interview with a local TV station. After that interview aired, another local mesothelioma patient called the TV station to find me and we were able to meet. This year, once again, I was blessed to meet so many of you for the first time. Whether it be meeting at a conference or at a coffee shop, face to face interaction with people whose lives have been touched by meso is such a wonderful feeling. We encourage one another, compare notes and stories, and have an unspoken admiration for one another for beating the monster.

Then summer came and went, and my daughter turned 9. Her birthday always reminds me of how many years I’ve been fighting mesothelioma. My mom came out for her birthday celebration, and our family, along with some really close friends of our family, took my dad’s ashes and spread them at his favorite golf course. I was pleasantly surprised by what a good time it was; it was not somber and sad, which would have upset my dad. Instead, it was a really fun afternoon with some quiet reflection and laughter. Lily tried her hand at golf for the first time that day, and also got to drive the golf cart. We felt my dad with us the whole time, and knew he was smiling down on us all.

In the fall, Mesothelioma Awareness Day brought another first. I participated in my first Miles for Meso 5k in Alton, IL. It is an annual event and all the proceeds go to the ADAO. My mom and I usually meet in NYC for Meso Awareness Day, but we decided to change things up this year. I was tickled to find out I was the top individual fundraiser, getting over $1500 for the event! I had such a great time, getting to spend the weekend with other meso warriors, who are not only warriors, but dear friends as well.

Two weeks later, I went to Chicago for a regional symposium put on by the Mesothelioma Applied Research Foundation. This event brought another first, as I was able to meet other meso warriors who I have been in contact with over the years. Through the Foundation, we were able to finally get together and have some great times with each other. At the symposium, there were so many exciting advancements in mesothelioma treatment. I am anxious to see what the next few years will bring.

All in all, 2014 was a good year, albeit marred by the absence of the man who was such an important part of my life. Although I still grieve, and it hits me like a ton of bricks out of nowhere, the absence isn’t quite as palatable as it was a few months ago. I don’t think you ever get over the loss of a loved one, but you somehow get used to the feeling of emptiness that is always there.

Many people wonder how my mom is doing with the loss, and I will tell you she is amazing. Of course she misses him and wishes it were different, but her faith, like his, is strong enough to move mountains. Although there is a veil between worlds, she feels his presence with her daily. They were married 50 years and they celebrated their anniversary just a couple of weeks before he died. Love like that doesn’t stop simply because one passes. It stays on in everything you do. Just like I feel my dad with me, cheering me on every time I try something new and in all my firsts. His love for me is evident everywhere.

I’m sure there will be many more firsts in my life and I intend on marking each one with the attention it deserves. Good or bad, firsts need to happen because without them, we can’t move on. Happy 2015 to each and every one of you! I wish for you blessings and happiness in the coming year.

]]>The Importance of Support for Cancer PatientsHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/the-importance-of-support-for-cancer-patients.htm
http://www.mesothelioma.com/blog/authors/heather/the-importance-of-support-for-cancer-patients.htmThu, 07 Aug 2014 04:00:00 GMTWhen I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.Eight years ago, information on the Internet about mesothelioma was scarce, and everything I did read was so scary that I stopped looking. At that time, Facebook was still private, and any other resource I found never mentioned mesothelioma. I felt like...mesotheliomamesothelioma treatmentsurvivorshipsupport for cancer patientsMARFADAOBrigham and Women's hospitalWhen I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.

Eight years ago, information on the Internet about mesothelioma was scarce, and everything I did read was so scary that I stopped looking. At that time, Facebook was still private, and any other resource I found never mentioned mesothelioma. I felt like no one knew what I was going through. Even my own doctor had never heard of a female getting mesothelioma, let alone one so young. Honestly, I didn’t know where to look for support. I was so overwhelmed with my diagnosis and everything else going on in my life. Having just had a baby, I was still wrapping my head around the idea of being a new mom, and now I had this monstrous battle ahead of me.

Finding Support

It wasn’t until I went to Boston to meet with the team at Brigham and Women’s Hospital at the International Mesothelioma Program that I realized there were people who understood what I was going through. At patient orientation, I met a wonderful man named Doug at an MRI appointment at 6:30 in the morning. When we found out we both had mesothelioma, we immediately exchanged numbers and emails and vowed to keep in touch. Our relationship was the inspiration behind the beginning of a patient match program at Brigham and Women’s.

Doug and I became fast friends. We started calling each other once a week to see how the other was doing, and to talk as time for our surgeries approached. Reunited in Boston shortly after I had my surgery, Doug was my first visitor other than my husband. He had his surgery a week later, and we recovered together. We forged a relationship that lasted through the ups and downs of the next 7 years.

Sadly, Doug’s mesothelioma returned and he passed away in October of 2013. My heart will forever hold him and his wife close as they are such an important and vital part of my life. It was my friendship with Doug that gave me the courage to seek out other patients to support, so they don’t feel like they have to go through it all alone, and to show people that cancer doesn’t have to be isolating. I reached out to the people of the International Mesothelioma Program and told them I would be happy to talk with any patient who was interested. Now, every time I go to Boston, I speak at the new patient orientation so these newly-diagnosed people can see that there is life after diagnosis. I also tell them to look around the room, and let them know that the people in that room will become family.

Soon after my treatment, I started looking for other outlets where I could meet and support other mesothelioma patients. I found out about the Mesothelioma Applied Research Foundation (MARF) through the twin daughters of a patient I had met in Boston. I happened to be in Washington DC with my mom for a business trip on a weekend when MARF was holding a mesothelioma conference. I decided to take a day and attend. Imagine my elation when I met dozens of other survivors! My eyes were opened to the world of long-term survivorship, and to this foundation that had so many people, like me, who were willing to share their story.

It was during lunch at that same conference where I met Linda Reinstein, who lost her husband to mesothelioma just after I was diagnosed. She, along with Doug Larkin, founded the Asbestos Disease Awareness Organization (ADAO). A fast friendship was formed, and through Linda I’ve met so many other amazing meso warriors. I always say it was Linda who gave me my voice and the courage to reach out to others going through this battle. I kept looking for more ways to make an impact; I wanted to reach other people who potentially didn’t know about these great resources.

Giving Support

The importance of having support of others who intimately know what it is to be diagnosed with cancer is something that another group I belong to is passionate about. Imerman Angels is an organization that utilizes mentors. If you find yourself diagnosed with a type of cancer, you call Imerman Angels, they look in their database, and set you up with a mentor who has had or is fighting your type of cancer. I joined to be a mentor about 2 years ago, and have mentored 3 patients through Imerman’s service. Talking to someone who has been down the path you are starting on takes a lot of the fear and uncertainty away. Knowing your reactions and symptoms are normal makes you feel normal, and much less alone in this battle.

The last 8 years have taught me that survivorship has its own set of rules and issues. Add being a young survivor to that equation and you have a double whammy. This is how I found out about Stupid Cancer. I did a radio interview and the gentleman who started Stupid Cancer was on it also; I was intrigued. He was an 18-year cancer survivor and talked about survivorship and its challenges and triumphs. Through the interview, I found out about local meet-ups with Stupid Cancer groups. I wanted to branch out and talk to patients with other forms of cancer. I believe we can learn so much from one another, and any battle is worth knowing about.

The local group is small, but we meet monthly at different venues throughout the city. All of us have different diagnoses -- breast cancer, esophageal cancer, Lymphoma -- and each individual has a story and experience to share. Friendships are formed on a much more foundational level. Instead of trivial questions, we get right to the hard stuff. But we’ve all been there, we know. There is no need for small talk. Peer support can spill over into other areas of life too, and common interests are discovered. I’m trying something I’ve been talking about for years with a woman I met at a Stupid cancer meetup -- we’re going stand up paddleboarding together! She is helping me do something that I would have never done on my own.

I’ve learned in my last 8 years of this journey, that the people who are in it with you can make all the difference in the world. Having people who know and understand your emotions during your cancer journey is life changing. A whole new world was opened to me and I don’t feel so isolated and alone anymore. I urge you, if you are going through any type of issue, whether it be illness, loss, postpartum -- anything that throws you a curveball in life -- find others who have walked your path; you will not only find help, but friendships that will last a lifetime.

]]>Having Our Voice Heard - 10th Annual ADAO Conference RecapHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/having-our-voice-heard-10th-annual-adao-conference-recap.htm
http://www.mesothelioma.com/blog/authors/heather/having-our-voice-heard-10th-annual-adao-conference-recap.htmThu, 24 Apr 2014 04:00:00 GMTI always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.When I was diagnosed with mesothelioma, I was a new mom and relatively healthy. Then my world came crashing down. Speaking and sharing my story has been instrumental for me in healing emotionally and physically from the scars that...ADAOADAO Annual Conferencemesotheliomamesothelioma diagnosisFACT Act

I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.

When I was diagnosed with mesothelioma, I was a new mom and relatively healthy. Then my world came crashing down. Speaking and sharing my story has been instrumental for me in healing emotionally and physically from the scars that remain from surgery and treatment. It also awoke in me a fierce desire to do it more. I wanted more people to know about the dangers of asbestos exposure. If I could get mesothelioma, anyone could.

When Linda called me last summer to tell me the news that I would be a recipient of the Alan Reinstein Award and ask if I would be a keynote speaker for the brunch at the 10th annual ADAO conference, honored doesn’t begin to describe how I felt. It was wonderful to see that someone was noticing all the work we had been doing to build awareness around this disease. I couldn’t say no! She asked me to speak about the power in our voice; how fitting, I thought, since she gave me mine.

This journey has been a long time in the making. When I started blogging for the Mesothelioma Cancer Alliance it opened up the floodgates, so to speak. With the help of our blog, we are able to reach out to individuals and communities through the web and social media, and we’ve created our own community around mesothelioma awareness.

Our community has taught me so much about the power of a voice. The amazing people I’ve met through this just leave me speechless sometimes--survivors and family members who are willing to share our story and bring awareness to a disease that most people only know about through commercials on TV. People are able to hear the voice of a real family affected by dangers of asbestos.

This is what Linda and the ADAO is all about, having our voice heard. This year’s ADAO conference had so many voices: there were 10 countries represented and 30 speakers from all walks of life. Present were patients, doctors, and industry experts who know firsthand the current state of asbestos use and dangers. The highlight was hearing the acting US Surgeon General, Rear Admiral Boris Lushniak speak on Saturday. He knows from experience what a menace asbestos is to public health and, with his help, we will get the word out that no level of asbestos exposure is safe.

The conference also had patients share their stories of triumph and tragedy. A young woman from Turkey named Sinem, who is a graduate of Dokuz Eylul University, has witnessed the horrible working conditions and asbestos exposure risks that happen in shipbreaking yards in her country. She is advocating for a global asbestos ban.

What the conference did for all in attendance was give us a call to action. We can no longer just sit and hope Washington will do something, we need to reach out and make our voices heard. Asbestos Awareness Week always coincides with the annual ADAO conference, and it does so for a reason. This year’s theme, Where Knowledge and Action Unite, was a call to all of us to do our part. Yes, I am a survivor, but can be so much more. The acting surgeon general even challenged me to get more involved and do more, and I intend on doing just that.

Becoming involved can be something as simple as calling your representative or Senator and telling them why they should not support harmful legislation, such as the FACT Act. Tell them your story, or the story of someone you know. Educate yourself about the dangers of asbestos, because education and awareness is the beginning, and right now the only cure is prevention.

]]>From Awareness Grows Hope - Kicking Off Asbestos Awareness Week 2014Heather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/from-awareness-grows-hope-kicking-off-asbestos-awareness-week-2014.htm
http://www.mesothelioma.com/blog/authors/heather/from-awareness-grows-hope-kicking-off-asbestos-awareness-week-2014.htmMon, 17 Mar 2014 04:00:00 GMTEvery year, 3000 people are diagnosed with mesothelioma.In 2005, I was one of them.I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.Because of that, Asbestos Awareness Week...mesotheliomaasbestosasbestos exposureasbestos awareness weekasbestos disease awareness organizationADAO

I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.

Because of that, Asbestos Awareness Week (April 1 – 7) is very close to my heart. Join me and organizations like the Asbestos Disease Awareness Organization as a voice for the victims, and together we can work toward an end to mesothelioma and asbestos disease.

Remember: From awareness grows hope. Each voice could save a life.

]]>Smashing Fears & Building Traditions - Lung Leavin' Day RecapHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/smashing-fears-building-traditions-lung-leavin-day-recap.htm
http://www.mesothelioma.com/blog/authors/heather/smashing-fears-building-traditions-lung-leavin-day-recap.htmThu, 20 Feb 2014 05:00:00 GMTEight years. I still find it hard to believe sometimes.That first year—the one-year mark of Lung Leavin’ Day—it was just Cams and me, outside by a little bonfire on a freezing cold night, writing our fears on a plate. Mine had everything to do with cancer, since surgery was so fresh in my mind. I didn’t read his plate; they’re his fears to smash, not mine. When we were finished writing we both took a breath and shattered our plates in the flames. With that, a tradition was born.As the years have...Lung Leavin' DaySurviving MesotheliomaMesotheliomaMesothelioma warriorsDr. David Sugarbakerperitoneal mesothelioma

Eight years. I still find it hard to believe sometimes.

That first year—the one-year mark of Lung Leavin’ Day—it was just Cams and me, outside by a little bonfire on a freezing cold night, writing our fears on a plate. Mine had everything to do with cancer, since surgery was so fresh in my mind. I didn’t read his plate; they’re his fears to smash, not mine. When we were finished writing we both took a breath and shattered our plates in the flames. With that, a tradition was born.

As the years have come and gone, the thing that stands out to me about every celebration is the variety of people who attend. Of course there’s family: sisters, nieces and nephews, cousins, aunts and uncles, and my husband’s mother, who always comes. But what makes me smile the most is the friends we have from many walks of life, people who would probably never come together in the same place except on this one night.

LungLeavin’ Day 2014 proved no different. Childhood friends came, including Eric, who used to get in trouble with my husband when they were kids, and my friend Michael, who was in band, choir and drama with me in high school, and recently reconnected with me. (Seeing Eric was Cam’s favorite part of the night.) Friends that were my clients from when I worked in the salon, that also knew me pre-cancer and now have husbands and families of their own. The newer friends, the ones I’ve met through mutual friends and random experiences, like Gene, who came with his 4-year-old son, Emerson. We met when Gene and I struck up a conversation in the butterfly house at the Minnesota State Fair. When he and Emerson walked in, I was standing there, covered in butterflies as Lily ran around me, catching the insects and placing them on me by the dozen. Emerson still calls me Mama Butterfly.

But the most touching part is always sharing the night with other mesothelioma and cancer warriors. This year we had three to celebrate with: Vicki and Sharon (two other “Sugarbaker Girls”) and my dear friend Bruce. Vicki is 8 months post surgery; Sharon, a year. Bruce has peritoneal mesothelioma and is going on 5 years survival, holding his own against the disease and doing great. When I saw them walk in, it made me so happy.

To celebrate life takes on new meaning when you’re told yours won’t last long. Yet here we all were, defying the odds and smashing our fears. Our backyard was frigid but beautiful, ringed by globe lanterns and strands of blue lights, with the bonfire burning orange in the center. One by one, we took our plate and threw it into the fire. Each one shattered in a burst of sparks, and by the end of the night, the fire was ringed by countless shards of broken plates.

It always takes me awhile to come down off the high of the event. As I write this, I’m still sort of floating on it, and it’s carrying me through some tough times. My dad is sick, and having the support of all these friends and family helps me face that, and the fears that creep up about a parent falling ill.

All I have to do is watch the video my husband made, or the one my friend in Virginia made of his own celebration, because he and his family couldn’t be here for this one. It’s the community, the support, the love that comes out of this celebration that makes it special. I hope in the coming years to use the day to encourage more people to face their fears, to smash a plate, to raise more money for a cure and to increase awareness. I hope Lung Leavin' Day can help other people the way it’s helped me—with letting go and moving forward.

]]>The November BluesHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/the-november-blues.htm
http://www.mesothelioma.com/blog/authors/heather/the-november-blues.htmMon, 25 Nov 2013 05:00:00 GMTNovember brings out the best in many people. The spirit of Thanksgiving is everywhere; on social media, friends are posting 30 days of thankfulness. I love this idea and have participated in it many times since I have much to be thankful for. But to me November is not a month I look forward to; in fact, I pretty much dread it every year since 2005. November means winter is starting, the days are shorter, it’s colder, it’s grey and dreary, and if we don’t have snow, we have rain and fog. My yard is...mesotheliomamesothelioma diagnosismalignant pleural mesotheliomascanxiety

November brings out the best in many people. The spirit of Thanksgiving is everywhere; on social media, friends are posting 30 days of thankfulness. I love this idea and have participated in it many times since I have much to be thankful for. But to me November is not a month I look forward to; in fact, I pretty much dread it every year since 2005. November means winter is starting, the days are shorter, it’s colder, it’s grey and dreary, and if we don’t have snow, we have rain and fog. My yard is all soggy, brown and depressing-- quite a change from the colorful summer and fall with all my many flowers blooming.

The main reason for disliking November is because in 2005 my world was turned upside down by my mesothelioma diagnosis. I know, I shouldn’t dwell on the past and I should live in the present moment. I know all of this, but it doesn’t take away the feeling that comes back every November. Dread might be too strong of word-- unease may be a better one. The entire first part of November in 2005 was a series of tests and scans to see what was wrong with me. November brings memories of feeling the worst I ever felt in my life with no energy to do anything while trying to work full time and care for my infant daughter. Going to my doctor appointments with a baby in a stroller, getting chest x-rays while a nurse held Lily in another room, and not knowing what the future holds. Going through a CT scan in a cold room, while my husband sat helplessly by and wondering what the hell we were in for. The waiting, the torturous waiting. My parents dropped everything and drove out to be with us during that time and to help me care for Lily. I was so weak and tired that I was not able to do it on my own.

November 21st, 1:30 p.m. my husband and I got our answer. Out of all the doctor appointments, that single one is the one that is the turning point. All cancer patients remember that appointment, the one when you get your diagnosis. The doctor told us I had malignant pleural mesothelioma. Through tears in his eyes he conveyed the message without saying a word, I knew I was up against something much larger than I had imagined. The rest of November was spent getting things in order for the trip to Boston-- all the travel arrangements, care for Lily, and mentally preparing for what was ahead. To me, November is a month of hurry up and wait, a month of hanging on the edge, a month of unease.

Every year since then, I still get anxious when November is coming. It doesn’t help matters that my 6-month appointment always comes around that time as well and this year was no different. My appointment in Boston was in late October and I’m happy to say all is clear! No sign of cancer anywhere, so that alone is reason to celebrate. But this year, November had other plans. My dad had been having some serious back problems and finally went to a specialist to get some surgery scheduled to take care of things. We found out a while ago that he has degenerative disc disease, so he was going to have some vertebrae fused. During an MRI, they found 3 tumors on his spine. I hear the word tumor and automatically think the worst. My dad, however seemed unconcerned, so I relaxed. Upon further tests, he was found to have a mass on his kidney. He had to have the back surgery because the tumors could have paralyzed him, so getting them off his spine was the first order of business. It was determined they were secondary tumors, stemming from the kidney. We got the diagnosis on Tuesday, November 12th-- clear cell renal carcinoma or kidney cancer. Screw you November and your month of cancer diagnosis. Screw you cancer for messing with my family.

My dad is a fighter and he has a great attitude, he won’t let this get him down. My parents have incredible faith and my I got my spirit from them. Once again, our lives have been turned upside down by a cancer diagnosis, but we’ll do what we did before. We’ll move forward and live in the moment. We will deal with what comes our way and know that our faith will get us through no matter what. In a strange way, it has opened up a whole new level of communication between my dad and me. He can discuss the cancer bluntly with me, and it doesn’t make me sad or bother me. I’m under no illusions of what this could mean to our family, and neither is he, but because of what I’ve gone through, we can talk openly about it and not end up in a puddle of tears. We joke that we can compare surgery scars and radiation tattoos. We aren’t going to sit and have a pity party and cry about it. After all, we’ve already been down this road once before. Some people call it brave, I call it living. Only the Big Guy knows when our last day on earth is, and with that knowledge comes the strength to fight. My dad says he has more to accomplish and isn’t ready to go yet.

Even though we have a mostly positive attitude about this next leg of our journey, I still get the November blues. Instead of a month for time to reflect and give thanks, to me it’s a month that cancer invaded my family, not once, but twice. It’s a month that, no matter how many years go between me and my diagnosis, will always have a black mark on it. It’s a month that I just want to get through and move on, I guess you could call it the November blues. I feel melancholy for all that was lost and angry because cancer came into my life. But in spite of all of that, I guess I’m still thankful-- thankful that I’m here to celebrate another year on this earth, thankful my family is strong enough to face this again, thankful for all the support and love from all over, and thankful for our faith to get us through dark and scary times.

November will always feel yucky to me, but slowly I’ve been doing things during the month to replace the bad with something bright. I focus on the positive and the good, and don’t dwell on the bad. I delight in the first frost that covers everything, the first snowfall that makes the grey/brown world pristine and bright, and all of the beautiful holiday lights and the promise of joy for the holiday season. I’ve told myself it’s ok to have the November blues and be sad for a time, let the feelings wash over me and revel in it. Then I get up, dust myself off and look December in the face and say, “Bring on the Holidays!!!” I have an 8-year-old little girl to make the holidays magical for and with the November blues behind me, that is an easy thing to do.

]]>Mesothelioma Awareness Day Recap - Be a Voice for the VictimsHeather Von St. Jameshttp://www.mesothelioma.com/blog/authors/heather/mesothelioma-awareness-day-recap-be-a-voice-for-the-victims.htm
http://www.mesothelioma.com/blog/authors/heather/mesothelioma-awareness-day-recap-be-a-voice-for-the-victims.htmWed, 16 Oct 2013 04:00:00 GMTSeptember happens to be one of my favorite times of the year-- not only because the weather is usually picture perfect and the leaves start turning, but every year my mom and I go to New York City for Mesothelioma Awareness Day. This was our 3rd trip and each year we love it more and more. It’s becoming a tradition for my mom and I to arrive a day early, enjoy a nice dinner and get ready for the bright and early wake up time of 4:00 am to get to the plaza of the Today Show by 5:30. We get there...Mesothelioma Awareness DayMesothelioma Applied Research FoundationCure MesoMesothelioma

September happens to be one of my favorite times of the year-- not only because the weather is usually picture perfect and the leaves start turning, but every year my mom and I go to New York City for Mesothelioma Awareness Day. This was our 3rd trip and each year we love it more and more. It’s becoming a tradition for my mom and I to arrive a day early, enjoy a nice dinner and get ready for the bright and early wake up time of 4:00 am to get to the plaza of the Today Show by 5:30. We get there so early to secure a good place around the barriers to be seen by the hosts. NYC at 5 in the morning is amazing, it’s actually quiet with the occasional roar of a truck engine in the distance. By the time we are allowed onto the plaza for the taping of the show, there is a line down the block of people wanting to get noticed. All of us who were there for Mesothelioma Awareness Day were dressed in our bright yellow “Cure Meso” t-shirts and grouped together so we would be noticed when the hosts of the show came around. Strength in numbers!

The morning of September 26th is also a reunion when I get to meet up with people I‘ve met through my years volunteering with the Mesothelioma Applied Research Foundation and the past 2 years in NYC. Its always a time for laughter and reflection. There is the noticeable absence of those we’ve lost to the disease in the last year and those we know are going through treatments and couldn’t make the trip. The seriousness of mesothelioma is not lost on us; the signs that some people had made in memory of their lost loved ones are all we need as a reminder.

During a segment of the 9:07 PM Today show, Kathie Lee and Hoda do ambush makeovers on 2 members of the audience. We happened to have one of our own chosen and they could not have chosen a better representative from our group. Marina lost her brother to mesothelioma years ago and her mother Hanne happens to be co-chair of the Mesothelioma Applied Research Foundation. Both Marina and Hanne had their bright yellow Cure Meso shirts on during the makeover and that alone got so much coverage. We were thrilled; and not to mention my friend getting a NY style makeover. To top off the morning, Al Roker talked briefly to Rich Mosca, who is also a board member of the Mesothelioma Applied Research Foundation, so we were able to let everyone know that September 26 is Mesothelioma Awareness Day.

What made the day even more exciting for me was what was going on in social media that day. “Dying To Be Heard” is a campaign we started by asking people to donate their Facebook or Twitter status for the day to “Be a Voice for the Victims”. I can’t begin to describe the feeling to look at Twitter and see all of the people posting on behalf of mesothelioma awareness. To top that off, over 100 bloggers helped spread the word for the day, reaching more people than I dreamed we could. What a blessing to know that I have that sort of network that is willing to use their voice to help spread the word about a very unknown disease. I let the feeling of that carry me through a very busy and fun filled day.

After the Today show, I did a video interview with a web magazine, which will be online soon! We also went to a taping of The Late Show with David Letterman. We ended the day with a dinner with a large group of people who were in town for Mesothelioma Awareness Day and attending the New York Mesothelioma Conference hosted by the Mesothelioma Applied Research Foundation that was scheduled for Friday.

The people who are with the Mesothelioma Applied Research Foundation are some of the most down to earth and passionate people I have ever met. Every single one of them on the board have been affected by mesothelioma, by either having it or knowing a loved one who has had it. It is not just a job, it is a mission. They are truly working their hardest to find a cure and bring about awareness in so many ways. Through supporting fundraisers and funding research grants, the Mesothelioma Applied Research Foundation is such a valuable resource for everyone affected by this disease.

Mesothelioma Awareness Day was started in 2004 as a way to get the word about this deadly disease out. This disease is about more than commercials on TV. It’s about real people, innocent people who have been devastated by the effects of what this disease does. Young or old, mesothelioma does not discriminate. Our work together will make a difference and the success of Mesothelioma Awareness Day proves just that.